Tuesday, January 24, 2012

( For those readers who receive Wheelchair Kamikaze via email, this post contains videos, which can only be viewed on the WK website.)

As you may have noticed, I've changed the look of Wheelchair Kamikaze, more out of necessity than preference. Google's Blogger service, which hosts this blog, has been introducing new blog templates over the last year or so. Along with these new templates, some new functionalities have been added, many of which don't work with the templates originally provided by the Blogger. One of these new functionalities provides an easy way to reply to individual comments left by blog readers, which I thought would be an elegant and useful tool to utilize. Unfortunately, this new function doesn't work with the old blog template that I had been using, so, after holding out for several months, I've finally switched to one of Blogger's new designs. Not so sure that I am all that thrilled with its look and feel, so I'll probably be doing some tinkering over the next several weeks. Feel free to leave your input and or suggestions on the new design in the comments section of this post if you're so inclined.

As for this edition of Bits and Pieces, I've collected some interesting links related to CCSVI, stem cell research, and a very important new law that will finally rip away the veil of secrecy that now shields the financial monkeyshines that go on between pharmaceutical companies and the physicians that they constantly court to get them to prescribe their products.

Included in the mix is a video of Suzanne Somers talking about her boobs, so let me never be accused of not providing culturally redeeming materials…

♦ On the CCSVI front, The International Symposium on Endovascular Therapy was held this past week in Miami, Florida (click here). The symposium featured several presentations on CCSVI, including data from what I believe is the first large-scale study looking at CCSVI treatment outcomes since Dr. Zamboni first published his initial findings. This study (click here), conducted in Sicily, tracked 170 patients who underwent CCSVI angioplasty. Patients were assessed by physicians prior to treatment using the standard scale to measure MS disability (EDSS), and were asked to assess their own quality of life using a 16 item questionnaire. At the three-month point post treatment, it was found that median EDSS scores fell from 4.5 to 4.0, with patients who suffered from less disability benefiting more than patients with more severe disability. Quality of life scores followed a similar pattern, indicating that patients relatively less impacted by the disease reported greater improvements than those experiencing a more advanced disease state. Since the symptoms most often cited as being improved by CCSVI treatment are fatigue, cognitive functioning, and heat intolerance, these findings do make some sense. Patients with less advanced disease (as defined by mobility issues) often find these symptoms to be their most debilitating, whereas more severely disabled patients might not find the relief of the symptoms quite so impactful. The authors of the study note that a longer observation time and a control group are needed to confirm these findings.

♦ An interesting theory out of Australia links chlamydia pneumonia infection with CCSVI (click here). According to this theory, the venous defects and anomalies found in the veins of MS patients might not be congenital (developed in the womb), but instead may be caused by chronic inflammation due to infection with the chlamydia pneumonia bacteria. According to this hypothesis, when inflammation within the vein walls subsides, it may leave behind the webs, septums, and valvular abnormalities now being found by doctors performing CCSVI angioplasty. There has long been a small but adamant group of researchers (led by a research team at Vanderbilt University) and patients who believe that MS is caused by chlamydia pneumonia, and some of these patients have successfully treated their disease using a long-term course of combination antibiotic therapy. More info on the link between MS and CPN can be found that CPNhelp.org (click here).

The proposed link between CPN and CCSVI certainly opens the door to new areas of investigation, and highlights just how much there is left to be learned about CCSVI and its relation to multiple sclerosis. What initially seemed to be a relatively simple hypothesis with a fairly straightforward minimally invasive surgical solution is now slowly being understood to be more complex than we had originally anticipated. The treatment protocol used to alleviate CCSVI is still a work in progress, with the techniques used varying greatly from physician to physician, and the results experienced by patients who undergo the procedure varying widely as well. Unfortunately, very little scientifically valid tracking of patient results has thus far been done, so most of our evidence remains anecdotal. The discovery of the vascular abnormalities associated with MS, now called CCSVI, is, I think, an extremely important one, but it's becoming increasingly clear that CCSVI is a part of a bigger MS puzzle, one that includes not only vascular issues but also genetic predisposition, infectious exposures, and environmental factors as well.

♦ The coming 6-12 months should bring important research data from ongoing CCSVI studies, information that very well could raise as many questions as it answers, as is so often the case with scientific investigation. The upcoming second annual International Society for Neurovascular Disease (ISNVD) meetings will be held in Orlando, Florida from February 18-22nd, and should bring with it a veritable smorgasbord of CCSVI findings (click here). For those readers in the Central Florida area, a patient information program is being held on February 18 at the Orlando Hilton, and registration is now open for the event (click here). Please note, for those not in the Florida area, registration for a live webcast is also available, at the link previously provided.

♦ Here's a chance for you to get involved in CCSVI activism. Activist Karen Golden Oronte has started a letter writing campaign to members of the US Congressional MS Caucus. A list of Congress members to write to, as well as tips on what points to make in your letter, can be found on the always informative CCSVI in MS Facebook page (click here). Compared to coverage in other countries, CCSVI has received very little attention here in the US (strangely so, actually), and this letter writing campaign is a great idea for raising awareness of the issue amongst our elected representatives. So write a letter and use the tools of democracy to make our voices heard. Power to the people, right on!

♦ It seems there has recently been a palpable uptick in the number and pace of advancements being made in the field of stem cell research. One early stage study was recently completed on patients suffering from SPMS, using autologous (taken from the patients themselves) mesenchymal stem cells infused into the patient intravenously (click here). Although the study was small (10 patients) and primarily aimed at assessing the safety of this kind of stem cell treatment, it also assessed the impact of the treatment on some of the visual deficits experienced by the patients involved. After 10 months researchers were able to document several physiological improvements in the treated patients.

♦ An interesting study done on mice demonstrated that exposing older mice with MS like nervous system damage to blood taken from younger mice activated stem cells resident in the central nervous systems of the older mice, resulting in nervous system repair (click here). Although this research is in its earliest stages, this may point the way to therapies that allow the stem cells that are resident in all patients to someday be stimulated to regenerate nervous system damage done by diseases like MS. In early MS, stem cells that are already a part of the nervous system can effectively repair damage done to myelin, but this ability decreases with age and time afflicted with the disease. In this study, exposure to youthful blood increased myelin regeneration in older subjects.

♦ Another group of researchers were for the first time able to convert umbilical cord stem cells into oligodendrocytes, the central nervous system cells that produce myelin (click here). This is a very important advance, as stem cells specifically targeted at central nervous system damage would, in theory, be more effective at repairing this damage than generic stem cells when transplanted into a patient. The use of umbilical cord cells circumvents all of the moral and ethical controversies surrounding the use of embryonic stem cells, and research on these cells, as well as on adult stem cells, offers the greatest promise for rapid deployment into a clinical setting.

♦ As an American male who was a teenager in the 1970s, I can attest to the incredibly powerful effect that the jiggling Suzanne Somers, star of the sitcom Threes Company, had on the raging hormones of red-blooded American males of the era. I'm not too proud to admit that I watched the show not for the deadpan humor of Norman Fell or the comedic timing of John Ritter, but for the substantial endowments of the young Ms. Somers, which the producers of the show put to prodigious use by packing each half-hour with as many scenes of the actress dressed in tube tops or cut off T-shirts as possible. I've been aware for the last several years that Ms. Somers has been battling breast cancer, and was extremely heartened to come across this video clip, in which she explains that she appears to be winning the battle, and that an experimental stem cell treatment helped regrow one of her breasts after breast cancer surgery. Breast cancer is serious business, as is the disfigurement its treatment can leave behind, so this was all very welcomed news. Here's Suzanne Somers, happily explaining how stem cells helped her grow a boob:

♦ Under the United States' new healthcare law, sometimes derisively referred to as Obamacare, pharmaceutical companies will soon be forced to disclose the payments they make to doctors in an attempt to increase the sales of the drugs and medical devices the companies produce (click here). Physicians are routinely paid tens of thousands of dollars in "consulting fees", are treated to all expenses paid "educational symposiums" that are most often held at luxury resorts in exotic locations (where more time is spent on the golf course than in educational conferences), and are treated to expensive dinners, all in the name of "educating" them as to the merits of a particular pharmaceutical product. Analysts have found that at least one quarter of doctors routinely taking cash payments from drug or device makers, and that two thirds accept gifts of food, including lunch for staff members and dinners for themselves.

The New York Times reports that it "has found that doctors who take money from drug makers often practice medicine differently from those who do not and that they are more willing to prescribe drugs in risky and unapproved ways, such as prescribing powerful antipsychotic medicines for children." How nice.

Under the new regulations, a website will be set up on which patients can research exactly how much pharmaceutical largess their physicians have received, and thus be able to make better informed medical decisions for themselves. All I can say is, it's about freaking time…

♦ On a very sad note, one of my favorite recording artists, the incomparable Etta James, has died. Although beset with drug abuse problems for much of her life, Ms. James had an incomparable voice, one that conveyed the deepest of emotions with a simple inflection or a throaty growl. Having spent much of my career working for a major label music company, I can attest to the fact that many of today's most lauded singing stars sound no better than you or I do when warbling in the shower (you would be shocked, believe me), their careers kept aloft by the prodigious use of electronic wizardry and slick production. Not so with Etta James, who built a career in an era when actual talent and the soul of an artist were required to achieve stardom. Sleep well Etta, your powerful essence will live forever in the hearts of many, in the form of your magnificent music.

Yes, her singing "At Last" would have been most fitting. Etta really was a special performer, it seems like all of the great ones are fading away. Today's stars just don't hold a candle to the greats of old…

"According to this hypothesis, when inflammation within the vein walls subsides, it may leave behind the webs, septums, and valvular abnormalities now being found by doctors performing CCSVI angioplasty." One thing I believe is that those abnormalities are coming from somewhere ( bacterias, viruses, hormones growth, hormonal changes, blood toxicity...who knows). Zamboni is right by saying that CCSVI is only the beginning of the story and that a multidisciplinary group of researchers in different fields must team up to investigate MS. Mylène therrien ( Québec)

I agree completely, and I think this view is being borne out by the research. CCSVI is a part of a much bigger picture, and how big a part remains to be determined. It probably varies from patient to patient, as the disease is so heterogeneous. Some patients might have a disease that is primarily vascular, while others may suffer from a form of the disease that doesn't even include any vascular component. There is still much to be learned…

I think the template I am using is called "Simple". I had to modify the layout and column widths, but the changeover was much easier than I thought it would be. I'll definitely be doing some tinkering, though…

hi marc, excellent article, as always. CPN about, I think this theory is not entirely correct, because with it you can not reconcile some epidemiological data of multiple sclerosis, such as feeding or multiple sclerosis resistance in malaria endemic areas. If CPN was the cause of multiple sclerosis, patients treated with immunosuppressive agents would worsen his health, which does not occur. however I think it's the right way in the search for the cause of multiple sclerosis. thank you very much for your work, sorry for my English.

No worries about your English, your message comes through loud and clear. I tend to agree with you about CPN, but I do believe that infectious elements to play a role in MS disease etiology. Infectious agents may not be a direct cause, but instead may act as a trigger that helps jumpstart the disease process. Ultimately, MS may turn out to be a number of related diseases, each with its own unique root causes, and effective treatments.

The epidemiology of MS (disease clusters, migration patterns) also seems to support some role for environmental and/or infectious factors.

I've long thought the logic behind the diagnosis of MS is flawed. It's a diagnosis of exclusion. It's not an STD. It's not Lyme's. It's not ... therefore it's MS. I liken this to saying we know the key to this logic is a string of characters. We also know it's not "A" and it's not "B". It has some characteristics which make me think it's at least got a "C" some where inside, so it's a "C" virus. I know you say it never sounded like a "K," but remember it could sound like an "S" and still be the "C" virus...but there are lots of us for whom it sounds more like a "J," but we will be diagnosed as having the "C" virus because it's not the known "A" or "B" virus.

The logic behind a diagnosis of exclusion has always been suspect. We don't progress the using a predictable pattern in terms of symptoms or in terms of progression speed. There are times where it boggles my mind to diagnose such diverse symptoms as the same disease. I am waiting on research to show people with MS have more blockages than the healthy, and their location is predictable based on symptoms.

Good luck with your new template. As long as your unique fabulous content is present, it does not much matter to me what the format is, though this one works just fine. Any chance you can use one or several of your photos as a header? As usual, your writing illuminates. I must say that seeing boobs in the title and a picture of Suzanne Sommers right below it made me pause for a second. And maybe that's what you intended.Judy

PS I mistakenly hit reply on one of your comments which is why I had to remove the content, since this is not a reply to a comment.

Thanks for the wishes of good luck. I am playing with ways to incorporate one of my photos into the header, right now the orange and black reminds me a little bit too much of Halloween. I just need to put a few hours aside for some fiddling…

I thought that the inclusion of the word "boobs" in the title of this post, along with the picture of Suzanne Somers might grab some readers attention. I'd hate for things to get boring…

Thanks for the comment, it's very helpful. I believe that the horizontal scrolling problem will only impact people using a smaller screen resolution than most of the latest monitors typically utilize. I believe the actual size of the blog is the same as the old format, but I could be wrong.

I'd love to know if this is a problem for other readers, so if it is please let me know.

Website comment-- I also have to scroll horizontally and I don't usually. In general, it's not as aesthetically pleasing as your original, so it makes sense that you changed it out of the new commenting feature, which I agree is a very good one. One thing I would look at as you play with the format is that the new set-up as compared to the old feels very "chopped up" right now, visually. Very compartmentalized.

However, your writing remains stellar. Seriously, a pleasure to read-- not just for content, information, and insight, but also because it's well-crafted.

Thanks for your input.I've narrowed the two columns that make up the blog, the left one that contains The videos, photos, and other assorted gadgets, and the body of the blog itself. Please let me know if this helps with the scrolling problem. I had been thinking that the compartmentalization might be a good thing, Better separating The posts from the aforementioned gadgets. Maybe I can make the visual impact softer by changing the color of the dividing lines.

Well, I'll continue to fiddle. There are a lot of new templates that Blogger is offering, but this one seemed best suited to match the old format. Some of the new templates are pretty radical, and would really impact the way the blog is presented. Not sure if the changes would be positive or negative. Anyway, I'll keep tinkering, and thanks for your input.

I would like to confirm that my hypothesis is one that links an infective agent to the venous disease that we observe in pwMS.The lymphatic system, and in particular the thoracic duct I believe is instrumental in producing the particular distribution of neurological lesions found in MS, and this is done via its connections to the cerebrospinal venous system. All the anatomical/pathology studies indicate an inflamatory/low-grade infective process centred around the veins. I have used Cpn as a possible environmental agent (and possibly the most common)to explain the pathophysiology, but I believe that others including Borellia and other Chlamydia species, and unknown agents may use the same mechanism. As another blogger has commented above, MS is a disease of exclusion, once the true pathophysiological mechanism is confirmed, it is then called 'x" disease.

Thanks, Dr. Thibault, for contributing your comments to the discussion. Your findings are extremely intriguing, and I'd like to suggest that some of the other infective agents at play may be viruses in the herpes family (EBV, HHV-6, zoster varicella), for which there is mounting evidence of an important role in MS disease etiology.

The fact that various labs have found CPN and other infective agents (especially EBV) present in the CNS and lesions of MS patients makes me wonder if the venous phenomenon we now call CCSVI may be a comorbidity to the syndrome we now call MS. Certainly, vascular problems seem to play more of a role in the disease of some patients than others, and an unfortunate confluence of genetic, environmental, and infectious factors would seem necessary to kickstart the MS disease process.

Again, immense thanks for your contributions both to MS research and to this blog.

Eileen-I do get a fair number of notes from folks whose native language is not English, some of whom have used Google translate to read my posts. I've also given many people permission to translate posts for distribution in other languages.

Thanks Marc for your tribute to Etta James. We were fortunate to have seen her perform 2-3 years ago at Marin Civic Center, (near sf) it was part of a subscription and all night long, as she got raunchier and more and more real, blue-haired ladies and parents-with-youngsters-in-tow got up and walked out. It was remarkable. I'd never been in a concert that was that good in which so many people walked out. I think they came cuz they had a subscription and had no idea who she was and why she was great. She was defiantly not for the 'Cultured" (aka season ticket holders) but she sure was real and just as good in her 70's as she was as a youngster. Those of us who only came that night, to see her, had a great show!! She was wild and wonderful. I miss her and Amy a lot lately. Have them both playing in my car!

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...